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Cystic Fibrosis Foundation

Tirelessly looking for a cure

Cystic Fibrosis is complex, multi-faceted genetic disease found in about 30,000 people in the US. The Cystic Fibrosis Foundation recently celebrated 65 years of working to learn more about the disease, helping those with the disease lead better and longer lives, and tirelessly looking for a cure. This work has resulted in a much better understanding of how to help those that suffer with the disease, multiple types of treatments and resources to allow caregivers, patients and the general public a better understanding of what the disease is, and where to get help.

Facing the 65 year milestone of fulfilling their mission to not rest until a cure is found, CFF reached out to us to help them create a place where the wealth of information and resources could be available to anyone that needs it. Our team has experience helping organizations like CFF reach out to the greater community in order to share their work, but this project provided new challenges due to the complexity of the disease and volume of information they had to share.

The fact that there are many manifestations of CF, and so many treatments and so much information to be shared forced us to look for a simplified presentation that would give users clear and easy paths to follow in order to find whatever they need or want. Layered on top of this was also the recent announcement of a “$500M Path to a Cure” initiative to encourage the acceleration of the search for a cure. This exciting announcement was just another building block to be included.

The journey to end cystic fibrosis isn’t a straight line.

As is quoted on the CFF site, “The journey to end cystic fibrosis isn’t a straight line. It is an evolving map with many paths and unique challenges. It requires an ambitious research agenda to accelerate treatments and drug development for the underlying cause of the disease and ultimately deliver a cure.” The same was true in our approach to helping to develop this community for CFF.

Cystic Fibrosis Foundation Social Media

As is the case for many foundations that support the research and treatment of complex diseases, it has become paramount for these foundations to not just do the work but also develop community resources for the disease that they support.  Building such an environment assists everyone – patients, caregivers, and the wider community – to find the information needed to gain a level of understanding and reassurance that there are resources to make their lives better, and hope that there will one day be a cure. It is extremely important that the environment be a place where people can find information, interact with others to share stories, and find help.  

This is a big ask for any of these foundations and many have decided to approach this by creating a kind of story that pulls in all of these aspects: describing the mission and work of the foundation, descriptions, causes and manifestations of the disease, and the resources available – be it financial, treatments, or where to find care, also key is a good dose of all of the research and work being done for a cure, blogs for others to share their stories and places to encourage donations and other ways to help.

The resources amassed by CFF are so numerous that our challenge was to organize it all for everyone in a clear way that was easy to navigate and provided a positive view of all that is being done. Our first step was to break it down into clear areas of attention. We chose to do this by creating several specialized spaces for information to exist.

First – explaining what CFF is, its mission and the work they have been committed to for the last 65 years; next, creating a space where those living with CF can find all the resources for treatment, day to day living and caring for a loved one;  then all things specific to finding care and the guidelines to set out when looking for a care; also needed was a space where people can go to get help for any aspect of their challenges when living with CF; and finally an area for Research – a place where everyone can see the progress and what is coming – a place for hope.

Cystic Fibrosis Foundation’s Story

All of this was put together with the goal of creating a positive and helpful community.  As is the mission of CFF – we wanted to provide a way to help those suffering with CF with a centralized resource to lead long and fulfilling lives and be able to have up to date information about the disease in a clear and energizing environment.